Today we’re announcing a new cluster headache advocacy and research initiative: ClusterFree

Learn more about how you (and anyone) can help.

Our mission

ClusterFree’s mission is to help cluster headache patients globally access safe, effective pain relief treatments as soon as possible through advocacy and research.

Cluster headache (also known as ‘suicide headache’) is considered the most painful condition known to mankind. We believe it is one of the largest sources of preventable extreme suffering in humans today. Every year, about 3 million adults (and an unknown number of minors) suffer from this debilitating condition.

And yet, even in the EU, only 47% of the cluster headache population had unrestricted access to standard treatments (primarily oxygen and triptans) in 2019. Despite affecting a similar number of people as multiple sclerosis, global investment into cluster headache is minuscule.

At the same time, countless patients have reported previously unattainable relief using certain psychedelics, even at low doses. For example, psilocybin, LSD and 5-MeO-DALT can effectively prevent attacks, and N,N-DMT can abort attacks within seconds and also have some preventative effects. However, these life-saving treatments are inaccessible to the vast majority of patients.

We want to tackle these problems by:

• Publishing open letters demanding that governments, regulatory bodies, and medical associations worldwide take action immediately, with a focus on easing restrictions around psychedelic use.
• Providing patient groups with high-quality resources and supporting their advocacy efforts.
• Engaging with policymakers globally to advocate for better access to treatments.
• Publishing research on cluster headache and supporting other researchers in the field.
• Collaborating with entrepreneurs and philanthropists motivated to bring new, effective treatments to market.

About us

ClusterFree is a non-profit initiative incubated by the Qualia Research Institute.^[1] It is led by Alfredo Parra, with Andrés Gómez Emilsson (President, QRI) as co-founder. Bob Wold (Director, Clusterbusters) and Jonathan Leighton (Executive Director, OPIS) are members of our Advisory Board.

We will be collaborating closely with Clusterbusters, the largest and most well-known cluster headache advocacy organization, led and run by patients. For about 25 years, they have been at the forefront of cluster headache advocacy, especially in the US and the UK. We are excited to bring more capacity and new approaches to tackle other jurisdictions, and to show that patients are not alone in this fight.

How you (and anyone) can help

As our first project, we are publishing one global open letter and 11 country-specific open letters:^[2]

• Australia
• Brazil
• Canada
• Germany
• Mexico
• Netherlands
• Spain
• Sweden
• Switzerland
• United Kingdom
• United States

Anyone can sign the global open letter. Additionally, if you live in or come from one of the countries above, you can sign that letter as well. Signatories include Prof. Peter Singer, Scott Alexander, Dr. Christopher Gottschalk (Yale), David Pearce, and Dr. Daniel Ingram.

Please share the letters widely within your network!^[3]

If your organization wants to show its support for ClusterFree’s mission, we can list it as a partner on our website.

A few other ways to help include:

• Donating or putting us in touch with potential donors. Donations are tax deductible in the US.
• Volunteering for various tasks (many of which are very simple but high-impact).
  • Join the ClusterFree Slack to see what needs doing and receive other updates.
• Connecting us with journalists, podcasters, or influencers.
• Offering any pro-bono services that could help the cause.
• Giving us feedback on the website.
• For patients: Sharing your testimonial (which we can feature here).

You can get in touch any time.

Room for funding

We have been making good progress on a shoestring budget during the past few months. Among others, we:

• Started an official collaboration with Clusterbusters.
• Gained the support of a member of a US state legislature.

• Started conversations with CH advocates in multiple countries (most recently India^[4], Denmark, and New Zealand).

• Are engaging with entrepreneurs and philanthropists interested in bringing DMT to market.
• Developed a preliminary idea for a new, legal abortive treatment that could be highly effective (potentially also for migraines).

We recently raised seed funding from a private donor to cover our core operations for the coming months. Additional funding would allow us to hire a second teammate to work alongside Alfredo at this early stage, particularly on outreach and communications. We could absorb an additional $50k–$150k immediately.

At this very early stage, we are still evaluating different paths to impact, and will likely test various strategies simultaneously to identify the most promising opportunities.

We believe ClusterFree is a great donation opportunity for people who care about relieving the most intense human suffering today. Cluster headaches represent a major health crisis even in developing countries, and we are far from having effective treatments widely available. Help us change that.

Additionally, you can consider donating to Clusterbusters or OPIS, who have been at the forefront of cluster headache advocacy and research for years.

Work with us

If you’d like to help us reduce the global burden of cluster headache pain (beyond volunteering), we’d love to hear from you. Simply fill out our expression of interest form.

Further information

• Website: clusterfree.org^[5]
• Email: info@clusterfree.org
• LinkedIn: linkedin.com/company/ClusterFree
• X: x.com/ClusterFree_
• Facebook: facebook.com/ClusterFree

1. ^{^}

   We are considering incorporating a charity in the UK. In the meantime, ClusterFree is fiscally sponsored by QRI.

2. ^{^}

   We are very grateful to the various volunteers from the EA community who contributed to the translations.

3. ^{^}

   Asking people individually to sign the letters works much better than asking in groups.

^{^}

Many thanks to Jacob Woessner’s volunteering work on this front.

^{^}

Website and brand design by Lombaert Studio.

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